Social, ethical and regulatory aspects of 'citizen science' in biomedicine and health care

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Biomedical sharing economies

On the 3rd of September, together with Mauro Turrini (Paris 1), we organised a session at the 4S/EASST conference in Barcelona discussing biomedical data sharing platforms and their place in the economy (see below the abstracts).

Many thanks to all speakers and participants!

Biomedical sharing economies

Convenors

Lorenzo Del Savio (Christian-Albrechts-Universität zu Kiel)

Mauro Turrini (Université de Paris 1)

Short Abstract

Empirical and theoretical perspectives on biomedical data sharing platforms, their participatory strategies and how they affect power and inclusion in biomedical research and health care.

Long Abstract

Digital technologies are reducing the cost of production and sharing of bio-data, stimulating new approaches to healthcare and biomedical research. On one hand, personal data may be adopted as a means to devise more precise strategies to diagnose, prevent, and treat diseases, even bypassing the medical mediation. On the other, non-professional citizens are recruited for research tasks such as data and sample collection, data coding, and problem solving in data-intensive large scale biomedical projects. An increasing number of crowdsourcing internet platforms aggregate participants to generate biomedical datasets. They often frame “lay” participation in terms of patient empowerment, healthy citizenship, research activism, or altruistic sharing, in line with other forms of contemporary sociality. Some of these platforms embody new forms of valorisation that put at work patients and healthy volunteers. This track session explores issues of patient empowerment, biodata ownership, privacy and control in these biomedical sharing economies. The aim is to expound their potential for making healthcare and biomedical research more inclusive, broadening healthcare and scientific citizenship as well as their capacity of furthering exclusion and creating new hierarchies and forms of exploitation. We seek papers that address questions pertaining expectations, motivations and experiences of the relevant actors, as well as more theoretical papers engaging with the political economy of these platforms.

Short Abstract

Long Abstract

Digital technologies are reducing the cost of production and sharing of bio-data, thereby stimulating new approaches to healthcare and biomedical research. An increasing number of crowdsourcing internet platforms aggregate participants to generate biomedical datasets. They often frame “lay” participation in terms of patient empowerment, healthy citizenship, research activism, or altruistic sharing. This in line with other forms of contemporary sociality, e.g. social media. Personal data may be adopted as a means to devise more precise strategies to diagnose, prevent, and treat diseases, even bypassing the medical mediation. Also, non-professional citizens are recruited for research tasks such as data and sample collection, data coding, and problem solving in data-intensive large scale biomedical projects.

A number of critical theories have been proposed to analyse these emerging biomedical sharing economies. We present theories of biolabour and theories of artificial scarcity, and discuss how they enlighten controversial features of such economies. We aim to reflect on how data sharing initiatives may make healthcare and biomedical research more inclusive, broadening healthcare and scientific citizenship but may also further exclusion and create new hierarchies and forms of exploitation.

Ethical issues in the Googlization of medical research. From data philanthropy to new power asymmetries

Author: Tamar Sharon (Maastricht University)

Short Abstract

Companies like Apple and Google have recently entered the medical research space. This talk argues that the disconnect between the logics of philanthropy and commercial interest at work in the Googlization of medical research have implications for both research ethics and issues of social justice.

Long Abstract

Following the announcement of a partnership between IBM and Apple last year to put health data from Apple Watches into the hands of doctors and researchers, Michael Rodin, senior vice-president of IBM Watson, stated that: “the generation who buy Apple Watches are interested in data philanthropy”. This agreement is just one example of the new collaborations between the health and technology sectors that promise to revolutionize medical research, and that are forming around the launch of platforms and services like the Apple ResearchKit, the Google Baseline Study or Google Genomics. As Rodin’s proclamation implies, this revolution is predicated on the philanthropic disposition of digitally engaged prosumers. But how does the logic of the philanthropy of data generators and of data sets as a public good clash with the revenue generating practices of the companies that are driving what we might call the Googlization of medical research? How do the methods for collecting, storing and analyzing data in new models of digitally empowered research introduce new biases? And how may the emergence of new power asymmetries in this space shape future research agendas? This talk argues that the disconnect between the two logics of philanthropy and commercial interest at work in the Googlization of medical research have implications for both the quality of the research that will ensue and issues of social justice.

Health data cooperatives

Author: Michele Loi (ETH Zürich)

Short Abstract

MIDATA.coops are an institutional innovation aiming to enable citizens to gain control over their data, especially health data. This paper analyses the mission and role of MIDATA.coops within the data ecosystem, highlighting the ethics and government questions that are currently under discussion.

Long Abstract

MIDATA.coops aim to enable citizens to control their data especially health data. The paper seeks to clarify the mission of MIDATA.coops and their role within the data ecosystem. In particular the following issues will be discussed:

1. Why should citizens organize themselves as a cooperative in order to gain control of their data?

2. What functions should a cooperative have and what functions can be left to the private sector?

3. What, if any, should be the role of the for profit sector as a partner?

4. By virtue of what kind of ethical framework, can data cooperative ensure ethical conduct in data transactions by all of their members?

5. How can health data cooperatives survive in a digital economy environment dominated by large businesses, without being absorbed and transformed in their goals?

Precision medicine. Self-understanding in a molecularised framework

Author: Mira Vegter (Institute For Science, Innovation and Society)

Short Abstract

This paper argues that Precision Medicine promises a molecularly based openness affecting our identities in unprecedented ways. Can precision medicine be transformed into more emancipatory and empowering self-techniques? (Foucault 1986)

Long Abstract

The Precision Medicine Initiative (Obama administration 2015) is a broad research collaboration which focuses on individual data to build an healthcare scheme that will take into account genes, environment, and life style. The promise to address a more individual understanding of health and disease targets ‘molecular’ traits more specifically. Despite disclaimers that ‘precision’ does not mean patient-centered care, ‘precision’ is suggestive to being personalized; this paper investigates precision medicine in its relation to the individual.

This paper argues that Precision Medicine forms a new space of knowledge that builds on its predecessors ‘Laboratory Medicine’ (Jewson 1976) and ‘Surveillance Medicine’ (Armstrong 1995). The combination of scientistic and molecularised medicine on the one hand and broad population studies on the other, is what makes precision medicine such a powerful framework. Laboratory knowledge is represented through its space of illness ‘outside the body’; underneath the microscope, while population studies are defined in terms of risk, that adds a temporal axis. These two characteristics create the opportunity to think of oneself in new terms, a molecularly based openness affecting our identities in unprecedented ways, which is new and in need of philosophical reflection. Foucault is used to understand these new knowledge practices. Although Precision Medicine may serve to shape conduct of the individual because it opens up the self for scrutiny by others, it is also opened up to self-scrutiny. The individual may transform precision medicine into more emancipatory and empowering self-techniques. (Foucault 1986)

Short Abstract

A research on the apps for mental health has been carried out. The hypothesis is that these tools are a new driver of pharmaceuticalization. The results show as the use of these apps strength the neoliberal idea of health as an individual responsibility, marginalizing any discourse on social justice.

Long Abstract

Contemporary society is becoming increasingly medicalized (Light and Maturo, 2015). The last three versions of the DSM are characterized by a steady increase in the number of syndromes included (Conrad and Maturo, 2009). Indeed, mental health is likely the most pharmaceuticalized sphere (Abraham, 2010). On these basis, a research on the apps for mental health has been carried out. The hypothesis of the research is that the apps used to self-track different aspects of mental health are a new driver of pharmaceuticalization. The apps for health give rise to a neo-liberal discourse in which the subject is understood as a self-entrepreneur responsible for her own productivity (Lupton, 2014). The so-called “quantified self” acts on reality with the conviction that a data-driven life can enhance one’s health status. The mechanisms that foster this attitude are “gamification” and “quantification”. We seek to demonstrate this through a content analysis of the 12 most downloaded mental health apps focused on two different kinds of texts: the description provided by the app itself and the reviews written by its users. The investigation reveals that these types of apps are giving rise to an idea of the subject which is completely separated from social factors, with a strong emphasis on pharmaceuticals as the best response to mental disorders. As a result, this de-policitization and molecularization of mental health brought about by the apps strengthens the neoliberal idea of health as an individual responsibility, marginalizing any discourse on social justice.